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Greg and I moved back to our home in Vermont today. Now, instead of weekly visits to the hospital in Boston, we’ll only have monthly visits. This would’ve come much earlier had it not been for the (likely) false diagnosis of CMV and the myelosuppressive therapy that ensued, which may well have been key to my contracting the C. difficile that knocked me down so far. But despite all of this, I’m now doing quite well and feeling very strong.

Last Tuesday during my last weekly visit, I was in the room where nurses take vital signs, and a woman was sitting next to me. She was wearing a mask and gloves, and when this sort of thing happens—when two transplant patients are sitting next to each other—there’s this strange E.T.-and-Elliot thing that goes on; we just want to talk to each other. Or in my case: I can tell they’d like to connect with me, and I usually resist this, being a curmudgeon and all. But on Tuesday, the woman sitting next to me just jumped right in. She started asking me questions about my progress since transplant. I was in a pretty good mood that day, but had this happened on practically any other day, I’d probably have perceived this as rude prying. On this day, I saw it as tolerable prying, so we had a chat. During our discussion, she asked me how far along I was since transplant. I told her just over two months; she was quite surprised. She went on to say that she was six months out, and that I looked so good she thought I might be nine or more months since transplant, but certainly ahead of her.

I was pretty surprised by this reaction, and it made me realize that I just didn’t have any frame of reference for how well I’m recovering relative to the average patient. I’ve always thought that I’ve been doing pretty well, but I’ve never really known. So I asked my physician what he thought. He said emphatically that I was doing much, much better than most in terms of recovery, energy level, activity level, and such. In fact, except for the uncontrollable neuropathy and my problems with the treatment for that (more on that later), I don’t have many complaints. I’m more energetic now than I’ve been in ten years, and my red blood cell count is still rather low, but rising steadily, so more energy is yet to come.

So, despite my setbacks—the main one being the serious blow I took from the C. difficile—I seem to have rebounded and my health status has more than “caught up.” My blood cell counts look great for my stage, and my physician has actually started tapering my immunosuppressives, a month or two early. That means my lymphocytes will come on board earlier (but still many months away), which means protection from viruses. But this could also mean that Graft Versus Host Disease (GVHD) is going to hit soon. But GVHD also means Graft Versus Lymphoma effect: All my cells are me, including any remaining cancer cells that are almost certainly floating around. If—or rather, when my new immune system recognizes that it’s in a body of foreign cells and initiates an attack on my whole body, that attack will be on any remaining cancer cells too. In fact, because this attack is mediated by T-lymphocytes—and those cells normally communicate with B-cells when they initiate an immune response—this means that when GVHD does hit, those T-cells will preferentially seek out B-cells during their attack on my body. As I have B-cell lymphoma, those lingering cancerous B-cells will very likely come into contact with those T-cells that are seeking to fight off my cells. When this happens, the T-cells will recognize that my B-cells are foreign too, and some of those T-cells can kill my cancer cells on the spot (so-called, Cytotoxic T-cells).

So, GVHD is kind of a mixed bag. But one thing is certain from the empirical literature: Long-term survivors of stem cell transplants have mild-to-chronic GVHD. These people are far less likely to relapse, and people who have no GVHD are far more likely to relapse. So even though I’m over some serious infection hurdles, and even though the majority of death risk is clustered in the first three months post-transplant, I’m about to start facing the next challenges.

But I’m happy to be healthy, at least for now. And Greg and I are both very glad to be home. But I think we will both miss our deluxe apartment in the sky-hi-hi. And just for memento, here are some photos of the view we’ve lived with for the last 75 days:

The Prudential Building (tallest), and a couple of others that no one cares about.

Christian Science weirdos. Despite being cuh-ray-zee, their buildings are "truly beautiful to behold," including this lovely library.

More Christian "Scientists," with their absolutely lovely buildings (all the buildings in view are CS buildings in the famed "Church Park.") The shadow cast is from our sixties-built, 1984-style 12-story building (not run by the Christian Scientists . . . as far as we know).

I am so energetic, I can barely contain it. Anyone who has spoken to me on the phone lately can attest. For the last two weeks, my energy and strength has been rising every day, and now I feel better than I’ve felt in years. In early 2007, I was in a brief remission, and I felt wonderful, like I’d felt years before—before the fatigue set it, which happened three full years before my diagnosis in 2006. I now feel as good as I did during my remission, which can only be good news.

Reasons for my quick recovery are many: Being able to eat, no more diarrhea, and, most recently, the cessation of a particularly nasty treatment. That treatment, with the drug ganciclovir, is for infection with CMV, cytomegalovirus, thea virus that in healthy people causes mononucleosis‡. I was taking this drug probably because of a hospital error. In order to explain, a brief digression into biology is required. (Regular readers shouldn’t be much surprised.)

CMV is one of the most commonly transmitted viruses on the earth. The probability of contracting CMV rises with every year over one’s lifetime, and virtually everyone has it by middle age. Despite this, I luckily tested negative in my pre-transplant blood tests. Even more luckily, my donor was also negative. This was great news, as CMV can cause blindness, serious lung problems, meningitis, and death in immunosuppressed people—facts that I remember all too well from my AIDS activism days in the late ’80s and early ’90s. My early blood tests found no antibodies for CMV, and a highly sensitive test for CMV’s DNA, called PCR (for polymerase chain reaction), also showed negative initially. However, three weeks into my transplant, a weekly PCR test was positive. This was somewhat odd.

CMV is a herpes virus, and like all herpes viruses (including the virus that causes chickenpox [Herpes zoster]; Epstein-Barr virus; and of course, Herpes simplex I and II), CMV can hide inside cells that it infects, inserting itself into our cellular DNA. When this is the case, a DNA test of blood might well be negative. So if the CMV became active later, a previously negative PCR could become positive. That part wasn’t the odd piece. The odd part was my antibody negativity.

Antibodies are those amazing, disease-specific chemicals that our body produces in response to invasion by viral infections. For every virus that infects us, we have a different antibody (well, almost). But I was antibody negative for CMV, and that was the weird piece. If I had been infected before, and the CMV had become quiescent, and then reactivated three weeks after my transplant, I would’ve been antibody positive the whole time. But despite my suspicions of the apparently discordant blood tests, the positive PCR meant action had to be taken, and fast. Because of the great risk of CMV infection, my physician rightly put me on ganciclovir immediately.

The great thing about ganciclovir is that it is very successful in defeating CMV. I remember when ganciclovir came to market; it was a revolution for people with AIDS. Prior to ganciclovir, having AIDS often meant the loss of sight, or worse. And nothing could be done to stop CMV. Ganciclovir changed all that. But the bad news about ganciclovir is that it suppresses the production of blood cells, especially white blood cells. After I began taking the ganciclovir, all of the components of my blood—my platelets, red blood cells, and white blood cells all crashed. After an unusually fast and strong engraftment of my donor’s stem cells, which resulted in my having normal or near-normal blood counts for the first time in years, I was back to square one, and continuing to take the drug kept me there. And to boot, after this blood cell crash, I contracted that awful C. difficile infection. Administration of ganciclovir has a known association with infections like C. difficile. I had to be treated for the apparent CMV infection, but the treatment made me fragile.

Two weeks ago, my DNA test for CMV was negative, as it had been every time after the first test. I asked my physician why I would not have anti-CMV antibodies if I had CMV (again, antibodies are always produced when we’re exposed to an infection, and we keep them forever). After some discussion, my physician agreed that this was odd, and hypothesized that perhaps I’d acquired the CMV infection from one of my many pre- and post-transplant blood transfusions. But that didn’t explain everything, and I left that meeting unconvinced.

Over the next week I puzzled over all my clinical data. Why was I antibody negative? Maybe it was because my immune system was so shot that it couldn’t produce any antibodies. That is very likely true, but even so, I should still have residual (and easily detectable) antibodies from before the transplant, as they remain in the blood months after they are created. Considering the DNA tests, I wondered how the ganciclovir could have eradicated the infection so quickly; I’d started taking the drug on a Thursday evening, and by the following Tuesday morning all evidence of the viral DNA was gone. Ganciclovir is a good drug, but that good? I asked about this the following week (last week). My physician—who is remarkable in being open to discussion and input—considered my concerns and took a third look at the data, treating them all together. The negative antibody test, the lone positive PCR result, and the rapid PCR negativity that never reversed—they just didn’t add up. After this, my physician concluded that the first CMV test may well have been a false negativepositive (this can happen with PCR, because this DNA test is extremely sensitive, and in labs where these tests are run routinely [like mine], contamination can be a serious problem). As a result, we decided to stop the ganciclovir. My blood cells, in theory, should begin to rise again.

So, yesterday when Greg and I went to the hospital for my weekly appointment, we were a bit disappointed that my blood cells had not rebounded more. My hematocrit (one measure of red blood cells) was a bit higher, my white blood cells had gained 500 cells per squared cm (up from ~1,100), but my platelets were down from 80,000 to 50, 000 (both well below normal)—a mixed result.

But given how amazing I feel, I wasn’t too worried about this. I did ask about the possibility of graft failure—a topic I’ll take up a bit later—but looking at the data on the proportion of “my” blood cells that are truly mine verses from my doner, everything looked excellent.

Stem cell transplant is an unlikely business. Juggling all the variables—the risk of infection, the risk of Graft Versus Host Disease, the many drugs, the side effects of those drugs—managing all these can all be . . . well . . . at times impossible for both the physician and patient. This procedure is truly at the bleeding edge of our knowledge, and much of what goes on, and why certain aspects of the therapy work or don’t, is yet unknown. When in a situation like this, in my experience two factors are indispensable: patient self-advocacy, and physician finesse. Having cut my teeth on AIDS activism, I have no problem telling physicians that this is my body, and we must work together, as co-equal partners, to manage my illness, treatments, and recovery. My current physician agrees, unusually, and we cooperate to achieve our common goal. That cooperation is a big part of why I’m so energetic and healthy today.

That’s what I got today. Except for not knowing if the cancer is really gone . . . and my magnesium levels are not back yet, and my C. difficile sample won’t be finished until tomorrow, and my white blood cells were down slightly. But in general, I’m doing great. And I have to say, I have more energy than I’ve had since my oh-so-short remission in 2007. And the water is clean again.

You’ll notice I’ve added that image to the blog, a link to The OUT Campaign, a site dedicated to encouraging atheists to come out about their views. This is something that I’ve had a hard time doing for many years, despite overcoming many other fears years ago (for example, having been out as a gay man since I was sixteen).

The main reason it’s been hard for me to tell others about my atheism is that I have many friends and loved ones who are believers, and I cherish their company, respect their choices, and would hate to offend them. I have not posted this image to offend anyone.

But for this blog, it makes sense. Pervasive in our culture is the view that mystical forces—unseen and all-powerful, ancient and misunderstood—are the true solution to cancer. As Sontag observed in her incredible work, Illness as Metaphor, this view is common to all diseases when the ultimate cause of the disease is unknown, or poorly understood. For people with cancer, we often become desperate and despondent when therapies fail—I know these feelings all too well. And so many turn their hope to magical, “eastern” therapies. As far as I can tell, the only difference between the evil “western” medicine and the enlightened “eastern” “medicine” is that the former has, by definition, been subjected to empirical test, and the latter has not.

But people who hold these unscientific views are unrepentant: About a year ago, I was visiting some friends after yet another therapy had failed, and my cancer had doubled in volume; I was, I think understandably, disappointed, sad, and probably a bit grumpy. And a person I had only met a day before told me that people who are happy are more likely to survive cancer than sad people. When I asked for the name of the peer-reviewed journal from which this insight derives, she said she thought she read it in Omni Magazine (a discredited, discontinued, pseudo-scientific publication that promoted supernatural phenomena cloaked in the language of science). Her message here was clear: It’s your fault that you’re loosing this battle; cheer up, or face the consequences. (That fall, the fabulous Barbara Ehrenreich eviscerated this nonsensical view; you can find an excerpt here.) So I asked her if she thought it would help if I shoved a crystal up my ass. She was not amused, and I think, remained unaware of the horrific statement she’d made. Her husband (another atheist), standing next to me, hung his head in shame.

The view that crystals, and prayer, and laying on of hands can cure people of cancer is growing in our culture. When last in the hospital, with my horrific C. difficile infection, a staff member came into my room one day and explained that she could perform Reiki on me, which would help my nausea. My nausea was caused, as she put it, “of course, by unbalanced energy.” Um, no: My nausea was caused by an infection, thank you very much.

And this is quite strange, given the growing success of modern medicine’s treatment of cancer. Just look at the death rates for breast cancer below.

From the American Cancer Society's "Statistics for 2009."

Death rates were essentially stable or rising prior to the early 90′s, when genetic techniques (and thus, intimate understanding) first became available. Crystals and the like were being used just as much in the 70′s (probably more), but it was the science that made the impact, not the white light visualizations. The biological research that informs physicians is imperfect, and many still die, but this does not mean we are failing. Science is recursive, unlike any other system of knowledge; it challenges itself, by its nature, to prove existing ideas wrong. Still, not all cancers show this pattern, but the science that biologists use to discover details of the natural world inform physicians, who employ this knowledge to save lives. And many lives have been saved.

But this hasn’t stopped many people from thinking otherwise. Stanley Tucci recently lost his wife to a form of cancer, and in a Fresh Air interviewproclaimed that she did not die of cancer, but of the “conventional” treatments for cancer (the discussion of cancer begins at 18:35, and Tucci’s comments on alternative therapies begin at 19:30). Tucci went on to say that he only found out about “alternative” (that is, not subjected to empirical test) therapies months before his wife’s death, and concluded that had he known of these alternatives earlier, his wife would still be alive. I love Tucci; in fact he is one of my favorite actors, and I’m sure he is horribly bereaved; but this is just irresponsible.

Similarly, Bill Maher—famous anti-vaccine and anti-medicine advocate—in April of 2008 blamed Senator Arlen Specter for having cancer, and for his cancer’s relapse. (I would link to the YouTube video where I watched this, but it has apparently been deleted by HBO, even though many other Real Time episode clips from the same month remain. Hmm.)

I have watched Maher off and on for years. I agree with much of what he says, and I think he’s brave and smart. But for some reason, when it comes to medicine, he has lost all rationality. Maybe it’s because he’s lived in California for so long. Who knows? Only in a world where infectious disease has—with a few notable exceptions—been completely obliterated by medical action that derives from basic biological science, would someone claim that the real problem is the vaccine, the solution. And I could put many links to The Huffington Post (which I generally enjoy) with similarly inane assertions. Maybe I’ll do so in a later entry (but you can see for yourself in their Living section on any given day). And just look back 70 years, and consider the hundreds of thousands of children who died then of infections we now rarely see—infections we have conquered, and in some cases eradicated, with vaccines—and it is clear that Maher’s hyper-modern, myopic view is flatly false.

Microorganisms are living things, and they are merely trying to stay alive, just like us. It just so happens that they make their living by harming ours. We are no different; we must kill life to live as well. Only the plants are spiritually clean on this one. So, good nutrition will not save the world from this biological conflict; variation in resistance exists everywhere, and bacteria and viruses evolve, becoming more adept at overcoming our defenses. Good nutrition alone will not prevent infection, and many will succumb without the enormous benefit of medicine. It’s quite perplexing (and, increasingly infuriating) to watch Maher rant against religion as stupid in one breath, and in the next proclaim that good nutrition is the solution to illness, and therefore cancer therapies are bogus, and pregnant women should not get vaccines.

So I am not writing this with Maher’s intent. I’m not here to defame religion. I’m simply putting this link in my blog because it is honest, and it is a reminder of an important fact that both people with cancer and their loved ones need to remember: Cancer is a material condition; it requires a material solution.

The last couple of days have been rough, and I couldn’t post. But now it seems like the Flagyl is finally suppressing the Clostridium difficile infection. These bacteria—like so many other organisms—can shut down most of their metabolic activity when environmental conditions are unfavorable, and while in this state, they are essentially impervious to antibiotics. These spore forms can stretch their legs and start cranking our their toxins again once the antibiotics are out of my system, so relapse is always an issue. I’ll be cycling on and off the Flagyl for the next few months to deal with this likelihood . . . that, and eating lots of gram-positive, “friendly” bacteria in the form of tons of yogurt.

This reminds me of a very cool group of organisms, sometimes called water bears: the tardigrades. Tardigrades are the closest relatives of the arthropods, and they haven’t changed much in a long time (the 90 million year old fossil tardigrade shown below looks essentially like modern species).

Fossil tardigrade, from Grimaldi and Engel's spectacular book, Evolution of the Insects

Tardigrades can hunker down into a spore-like condition called cryptobiosis, and in this condition they can live for centuries (yes, centuries) with no food or water. In this state, they can survive intense radiation and even the vacuum of space. No doubt, this ability is one reason they haven’t changed much: If you can survive all environmental changes as you are, there won’t be much evolution going on. Killing these guys could be nearly impossible when they’re hunkered down. So, to put in another way, as bad as C. difficile might be, I’m just glad I don’t have a colony of tardigrades up my butt (thankfully, they don’t cause disease).

As I mention in the About page, this blog is not going to be a diary of pain and suffering. Nor will it be a record of hopeful triumph, courage, bravery, and . . . vomit (well, it probably will be about vomit from time to time. I certainly have been doing enough of that). Yes, sometimes I’ll write as though I’m making a diary entry: what happened to me today, or recounting a past event. I do want the blog to relate those experiences. But I’m also just putting down my thoughts about cancer—those shaped by my training as a biologist and as a person who has cancer. But now, a first of the diary-type entries.

Today was a rough day in a string of rough days. Immediately after my transplant, I had a typical litany of fairly minor problems: bacteria in my skin causing folliculitis, fungus in my crotch causing me to want to scratch myself to death, no platelets, no red blood cells, and of course no white blood cells. This is what happens when your bone marrow is destroyed so that another’s can take up root. So, I wasn’t surprised, and it wasn’t that bad. The first week I was pretty pleased with how easy it was.

Then came the fatigue. And I mean fatigue. As is usual, everyone at the hospital told me, “Oh, yeah, that’s very common” after I was blindsided by it. But I shouldn’t have been so blindsided; remaking your entire supply of blood cells is pretty heavy lifting. If I missed a single meal, I thought I would die. I had no spare energy. Not a bit. But once I got used to that, all was well. My new stem cells engrafted very quickly and started making for me a shiny new population of blood cells. My white blood cells came first, as they do, and my platelets shot up to within normal levels shortly thereafter. I was feeling great.

Then about a two weeks ago came the change: Excruciating bowel pain, leg pain, diarrhea, among others. After a spike in fever, I was admitted to the hospital, and after a blizzard of tests, it was discovered that I had Clostridium difficile. I had actually been tested for this bacterium the week before, but the results were negative then.

This germ normally lives in our guts, but with all the antibiotics I’d been eating, the bacteriological ecology of my intestines had been altered, and a new force was on the rise. I’ve been dealing with the trauma of that force since, and the drugs I’m on are working, but slowly. Those drugs also suppress my new blood cells, so many of my cell lines have fallen dangerously low again. I’m still having problems with my blood chemistry, because of the diarrhea; I’m still in a lot of pain (though less); and I still can’t eat much, which means I’m tired most of the time.

My nurse told me today, “Endure, endure!” She sounded like Whitman, and it gave me some strength.